Discussion of the NEW International Consensus Criteria

I'm confused because I had heard that Lenny Jason was supposed to be working on a big project developing the Canadian Guidelines so that it would be easy for doctors to use them. Or something along those lines. So the next big diagnostic criteria announcement, that I was expecting, was from Lenny Jason.

Is it right to assume that this is not the same project that Lenny Jason has been working on? And if so, I wonder why these authors haven't collaborated with Lenny Jason and his colleagues?

Page 14
"It is important to note that the current emphasis must primarily remain a clinical assessment,
with selection of research subjects coming later. For this reason the panel is developing
Physicians Guidelines, which will include diagnostic protocol based on the International
Consensus Criteria and treatment guidelines that reflect current knowledge."

Note the comment on the same page:

"Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be
removed from the Reeves empirical criteria and the National Institute for Clinical Excellence
(NICE) criteria for chronic fatigue syndrome."

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I don't think there is a NICE criteria for CFS.
I think that the NICE guidelines say that any diagnostic criteria can be chosen by the doctor, but they do recommend some criteria over others.

That raises a good point. Doctors would need to be made aware that for long-time patients, the questions should be asked in a "have you now, or have you ever since you got sick" format, because the range of symptoms changes over time. When I was first sick I have a lot more neurological symptoms than I have now.

Yes, but if these criteria are adopted for research, it may be easier to get biomarkers identified and adopted, since the results won't be watered down with people suffering from primary depression or idiopathic fatigue. And maybe when the clinical guidelines are completed they will include recommendations for lab tests.

I hope they will recommend testing for some of the commonly associated viruses (eg, EBV, HHV6, parvo, enteroviruses, etc), because even if they don't cause ME/CFS, getting a smoldering chronic viral infection cleared up would make you feel better, I think.

So what happens to those people who don't meet either ME or Canadian criteria? Unless there are major changes in the CFS labyrinth they may remain stuck there, and so will everyone else as well if the international ME definition doesn't facilitate change for ME patients. I don't think anyone who doesn't meet ME criteria should be abandoned for having an alleged biopsychosocial illness. The problem with CFS criteria is that it has always been relatively non-specific, a wastebasket diagnosis with potentially multiple types of medical conditions and lumped in with overlapping psychiatric diagnoses. Canadian and now international ME criteria has been a step in the right direction for carving off a large slice of this heterogeneous pie and loosening the stranglehold of a broad approach.

If there really is a general fatiguing biopsychosocial illness as conceptualized by Oxford criteria and Reeves' CFS, the split will be helpful for them too. However, much of the cited research in this new international ME definition used Fukuda criteria for CFS. Those that don't meet ME criteria may still have similar pathology and/or have a condition that isn't helped by the biopsychosocial approach. Having seen how "psychogenic/somatization/functional dismissal by default" has plagued the ME/CFS community for decades, I am cautious about leaving the non international ME and non Canadian ME/CFS patients out in the cold, but I meet both so naturally I'm going to be more concerned about patients and research that better reflect me.

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The worst-case scenario is that those without PENE would be that they would remain "stuck there." But it's also possible that they would benefit from the split also, because the research would be more precise with more specific patient cohorts. If there are different physiological responses between the two groups, everybody benefits from finding that out. It may be that drugs/treatments that work on PENE patients don't work on non-PENE patients and vice-versa. If so, clinical trials will be more successful if the two groups aren't lumped together.

The proposed new name for PEM also seems significant - Post Exertional Neuroimmune Exhaustion - PENE. (They have a pronunciation guide in there but I'm bad at reading that dictionary notation. What does it rhyme with?)

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And to caledonia; "PEM is now PENE (post exertional neuroimmune exhaustion). Pronounced pen'-e. Rhymes with "henna"?

urbantravels and caledonia, I think PENE (pen'-e) would be pronounced "penn-ee" (so, sounds like "penny" but with emphasis on both syllables).

I'm confused because I had heard that Lenny Jason was supposed to be working on a big project developing the Canadian Guidelines so that it would be easy for doctors to use them. Or something along those lines. So the next big diagnostic criteria announcement, that I was expecting, was from Lenny Jason.

Is it right to assume that this is not the same project that Lenny Jason has been working on? And if so, I wonder why these authors haven't collaborated with Lenny Jason and his colleagues?

Does anyone know?

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On page 12 of the doccument

This Consensus paper is free of sponsorship. All authors
contributed their time and expertise on a volunteer basis and no one received any
payments or honorariums

WPI is in first place in their region with 40,087 votes, Be Perfect is in second place with 12,167. WPI is winning by 27,920 votes

ME/FM National is in third place in their region with 5,795 votes, Light and love home is in first with 22,116 votes. ME/FM National is loosing by 16,329

I want WPI to win and would also like to see ME/FM National win rather then non relavent charities. I really hate to see the thousands of extra votes going to help Light and Love home win rather then to help us

ME/FM spearheaded the Canadian Consensus. They are working with researchers here in Canada and are doing much more then many realize. Please consider helping them to also win $100,000

Sadly, at this time, I am missing one. Under the flu-like symptoms, I have only one. Now, I fit all the other criteria. So I guess I am atypical. I used to have sore throats, but not any more.

Tina

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I myself would count a symptom still if I used to get it as part of the ME even if I dont get it now. As long as it was part of someones illness.. it seems kind of wrong to stop counting it. (I wonder how doctors etc would think when it comes to that)

I guess a lot of confusion could be caused by that kind of thing and whether to count ones old ME symptoms or not. But it would be logical to count it and if you would of fit the ME criteria back then fully.

My understanding is, that whilst these new international criteria have been co-authored by some of the original CC authors, (but not Jason) that these new criteria are independent of previous CC documents, but had taken the existing CC as a "starting point".

Is my understanding correct, that is, what has just been approved for publication but yet to undergo copy-editing and proof correction has been prepared and published independently to the CC and is not a revison of or replacement for the existing CC?

Suzy

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That is my understanding too Suzy.

Also - as Bob noted - Jason was and still is recruiting and assessing for possibly another set of criteria.

This ICC muddies the already muddy waters. Personally, I cannot see it holding water with any of the 'authorities' in much the same way as the CCC hasn't.

Still, it does carry some user-friendly terminology and that is always to be welcomed. But as for better-defining what Myalgic Encephalomyelitis actually is - or proving to the 'establishment' that it exists - I don't believe it does.

In fact we are now back where we have been many times before. Back to the whole 'issue' surrounding label use and definition. And I just cannot see NICE or the BMJ for that matter - let alone our doctors - accepting this one.

And when it comes to the important matter of 'What does this do for me?' as a patient and in terms of 'better treatment', then I am afraid that it also falls down here too.

The fact that I 'like' some of the terminology and the diagnostic criteria - but not all of it - and the fact that I believe I 'qualify' - means absolutely nothing.

What right does a patient have to consider himself as 'qualifying' for any supposed 'neuroimmune' condition in the absence of any specific tests?

The psychiatrists' - if you like - argument of patient illness belief is not overcome in any way by me walking into my doctors office and waving a copy of this ICC under his nose.

This does not constitute 'proof' of anything. Not in the eyes of those who count the most. 'International consensus' or no International Consensus.

I myself would count a symptom still if I used to get it as part of the ME even if I dont get it now. As long as it was part of someones illness.. it seems kind of wrong to stop counting it. (I wonder how doctors etc would think when it comes to that)

I guess a lot of confusion could be caused by that kind of thing and whether to count ones old ME symptoms or not. But it would be logical to count it and if you would of fit the ME criteria back then fully.

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I think this is an important point. While I easily fit the ICC, I no longer have the sore throats on a daily basis. I still get them occasionally when I overdo things. And I did have them for about 15 years. So I still regard it as a symptom of my condition, but one that is currently not persistent.

And I think you should too Tania. The fact that Atypical was classified in the criteria also means it is still regarded as important.

I agree with Tania. My symptoms revolve like a ferris wheel. E.G. my dry, painful throat can occur daily for 3 weeks, and disappear for 3 months. Dizziness can be constant, or fall in and out of the picture. When I checked off symptoms in the CCC, my philosophy was "is this part of my army of symptoms?" On most days, the symptoms I have are severe enough to keep me mostly in bed. But they almost never appear all at once.

I guess a lot of confusion could be caused by that kind of thing and whether to count ones old ME symptoms or not. But it would be logical to count it and if you would of fit the ME criteria back then fully.

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Hi Tania, if you don't count symptoms that have that declined, then you are forced into one of two options both of which lead to obsurdities.

The first is to insist the symptom must be a usual symptom (more often than not) for the last six months or some similar criteria. So you might have had ME, then you improved and cannot be diagnosed. When next you relapse they can't count it for six months (oops, we are back to that, something they are trying to eradicate as part of the definition), then suddenly you can be diagnosed again.

It is even worse if you ignore the symptoms and go by a current symptom measure. This means that on Monday you could have ME, but by Wednesday you don't, but by Saturday you do again.

I know most of my symptoms that have faded return during relapses, and I can relapse often if I don't look after myself.

So in some measure old symptoms must count, particularly in long term patients rather than the newly ill, or absurd situations arise. So I think that some leeway has to exist to include the old symptoms - this illness is so variable that failure to do so would be a problem.

Also - as Bob noted - Jason was and still is recruiting and assessing for possibly another set of criteria.

This ICC muddies the already muddy waters. Personally, I cannot see it holding water with any of the 'authorities' in much the same way as the CCC hasn't.

Still, it does carry some user-friendly terminology and that is always to be welcomed. But as for better-defining what Myalgic Encephalomyelitis actually is - or proving to the 'establishment' that it exists - I don't believe it does.

In fact we are now back where we have been many times before. Back to the whole 'issue' surrounding label use and definition. And I just cannot see NICE or the BMJ for that matter - let alone our doctors - accepting this one.

And when it comes to the important matter of 'What does this do for me?' as a patient and in terms of 'better treatment', then I am afraid that it also falls down here too.

The fact that I 'like' some of the terminology and the diagnostic criteria - but not all of it - and the fact that I believe I 'qualify' - means absolutely nothing.

What right does a patient have to consider himself as 'qualifying' for any supposed 'neuroimmune' condition in the absence of any specific tests?

The psychiatrists' - if you like - argument of patient illness belief is not overcome in any way by me walking into my doctors office and waving a copy of this ICC under his nose.

This does not constitute 'proof' of anything. Not in the eyes of those who count the most. 'International consensus' or no International Consensus.

Firestorm, It seems to me that unless they would allow you or Suzie to define what ME is in your own mind, you will not be satisfied, This group of doctors, biologists, scientists have been involved with this illness for decades all over the world. How many patients do you think they have collectively seen or studied? They have no other motive or agenda besides helping to define this illness, to name it and then better to be able to study it and come up with answers. Why can't you see the benefit of what just transpired? Is it because personally you don't find it adequate? What are your credential and experience studying this illness. I truly believe that some people here will not be happy with any progress.O course you and Suzie and others have every right to express what you feel but, sometimes-ok many times members automatically assume that they know better that all the great minds in the field. Why push this advance by the medical community out the window even before all the problems can me ironed out. I for one think that we should all e-mail to each and all the members of this comity to thank them for all their hard work they have done FOR OUR BENEFIT. They don't get anything out of this except heartache from all the complainers.

The symptoms wax and wane and the problem with many of us is when we do not have the symptom we forget it. The symptoms still count. Here is a link that was previously posted regarding some work done by Gordon Broderick in Alberta - a good step

Hi Tania, if you don't count symptoms that have that declined, then you are forced into one of two options both of which lead to obsurdities.

The first is to insist the symptom must be a usual symptom (more often than not) for the last six months or some similar criteria. So you might have had ME, then you improved and cannot be diagnosed. When next you relapse they can't count it for six months (oops, we are back to that, something they are trying to eradicate as part of the definition), then suddenly you can be diagnosed again.

It is even worse if you ignore the symptoms and go by a current symptom measure. This means that on Monday you could have ME, but by Wednesday you don't, but by Saturday you do again.

I know most of my symptoms that have faded return during relapses, and I can relapse often if I don't look after myself.

So in some measure old symptoms must count, particularly in long term patients rather than the newly ill, or absurd situations arise. So I think that some leeway has to exist to include the old symptoms - this illness is so variable that failure to do so would be a problem.

Bye
Alex

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I think you just said it in a better way Alex

"It is even worse if you ignore the symptoms and go by a current symptom measure. This means that on Monday you could have ME, but by Wednesday you don't, but by Saturday you do again. "

I like that explaination.. it IS so absurd.

I myself would have no trouble constantly meeting the new criteria UNLESS they put some kind of stupid time limit thing on it as if I take a lot of care not to excert myself (this basically means doing almost nothing!), I can actually at times go weeks without symptoms. So I may at times fall throu cracks if they ended up doing a check list asking things like "have you had a sore throat in past two weeks?" etc.